Shaping the Future: Influential Women in Autism and ABA Therapy

March is Women’s History Month. It’s a time to celebrate the accomplishments of women in all walks of life.

In the area of autism and contemporary applied behavior analysis (ABA) therapy, many women have made a lasting mark. They’ve broken barriers. They’ve conducted significant research, and they’ve paved the way for better understanding and treatment of autism.

Today, we spotlight seven women who have shown us what it means to lead with passion, dedication, and commitment. They are making a difference, and their work continues to inspire future generations of women in the field.

1. Temple Grandin: The Trailblazing Voice in Autism Advocacy

Temple Grandin, Ph.D., is a name synonymous with autism advocacy. Born in 1947, she was diagnosed with autism in early childhood. Despite the challenges, she went on to become an esteemed academic and animal behaviorist. She has gained recognition for writing books and delivering speeches on autism and animal behavior. Today, she is a professor of animal science at Colorado State University.

2. Greta Thunberg: Championing Climate Action and Autism Acceptance

Greta Thunberg is a Swedish environmental activist. She has gained global recognition for her efforts to fight climate change. She’s also known for being openly autistic. She has referred to her autism as her “superpower,” and has discussed how it has helped her in her activism by allowing her to focus intensely on topics that interest her. Greta has used her platform to advocate for acceptance and understanding of autism. On her Facebook page, she identifies herself as an “Autistic climate justice activist.”

3. Breanna Clark: Shattering World Records and Autism Stereotypes

Breanna Clark is an American Paralympic athlete who was diagnosed with autism at age 4. She competes in T20 category races, a classification for athletes with intellectual impairments. She has represented athletes with autism on an international stage. Off the track, she’s been an advocate and role model for people with autism.

4. Ronit Molko: A Powerful Force in Autism Therapy and Entrepreneurship

Ronit Molko, Ph.D., BCBA-D, is another luminary in the field. She is a thought leader and subject matter expert in autism spectrum disorder, developmental disabilities, and behavioral healthcare. She co-founded Autism Spectrum Therapies (acquired by Learn It Systems) and is a LEARN Behavioral board member. In this All Autism Talk podcast, she talks about how ongoing research is helping us better understand the unique challenges girls with autism face.

5. Devon Sundberg: Shaping the Future of ABA Therapy and Autism Awareness

Devon Sundberg, MS, BCBA, co-founded the Behavior Analysis Center for Autism (BACA). She has made significant contributions to the field of behavior analysis, both through her work at BACA and as the founder of the Women in Behavior Analysis conference. In this All Autism Talk podcast, she shares how raising three daughters helped open her eyes to how gendered life can be — and about the need for more women in the autism field.

6. Hanna Rue: Pioneering Innovations in Autism Treatment and Research

Hanna Rue, Ph.D., BCBA-D, is chief clinical officer for LEARN Behavioral. Her research interests are broad and include the identification of evidence-based practices for the treatment of autism. Her influence in the field of autism is evident in her wide-ranging work that spans clinical care, research, and advocacy. She has made significant contributions to STEM fields, sharing her insights through various platforms, including top-performing podcast episodes about autism, and extending her influence and reach in the autism community.

7. Sabrina Daneshvar: Revolutionizing the Field with Innovation and Compassion

Sabrina Daneshvar, Ph.D., BCBA-D, serves as the senior vice president of clinical services at LEARN Behavioral. Her research interests include video modeling and teaching social skills. This work has contributed to developing innovative strategies for improving social skills in children with autism. Sabrina has also taught, mentored, and trained many graduate students pursuing their degrees.

These are just a few women who have helped to shape the field of autism and ABA therapy. Their work underscores the importance of early intervention, peer support, and recognizing the diverse signs and symptoms of autism in girls and women.

We celebrate these women and everyone who has made contributions to advance our understanding of autism. They provide hope and inspiration to countless families across the world affected by it.

What is Contemporary ABA?

RONIT MOLKO, PH.D., BCBA-D
STRATEGIC ADVISOR, LEARN BEHAVIORAL

It has been said that history is written by the victors. The colonists won the American Revolution, and so the war has been cast as a noble struggle to escape the yolk of tyranny. Had the British won, history books today would memorialize the conflict as the empire’s rescue from the clutches of ungrateful rebels.

Likewise, able-bodied people comprise the dominant culture in America; thus, we define “normal” along the contours of able-bodied activities. We consider, for example, an autistic mind or a visual impairment that enhances other senses to be of diminished value. In fact, they may simply be different ways of understanding and interacting with the world.

For many of the 60+ million Americans who have some kind of disability, this is a challenge. They are forced to fit their round life into the square hole of able-bodied culture despite the ease with which culture could accommodate everyone, including those with disabilities.

Ableism and Ableist Misconceptions

The inability of the able-bodied to recognize that not everyone is like them has given rise to a new label – ableism. This is the equivalent of the racism White Americans exhibit by failing to recognize the advantages they have versus people of color. We must be attentive to eliminating assumptions that reflect an able-bodied view of the world that does not pertain to everyone.

People with disabilities tell me that ableist thinking includes a variety of knee-jerk assumptions and misconceptions, including this one: that people with disabilities have no autonomy and constantly need help, even if they don’t ask for it.

Another version of this is the idea that people with disabilities must constantly explain themselves, for example by detailing how they became disabled, or that they have average or superior intelligence even though they do not communicate verbally. It is also an ableist misconception that all disabilities are visible. This perpetuates stigmatization and mistreatment of people with mental illness, which is, after all, no different from physical impairment except that it affects the brain. Taken together, these false ableist impressions accrue as barriers to inclusion and equity for disabled people.

ABA Intervention

Applied Behavior Analysis (ABA), considered by many to be the gold standard of treatment for autism, has as its ultimate goal providing autistic individuals with the skills to function at their highest potential and live as independently as possible. The field of ABA has decades of empirical evidence to support its efficacy in teaching new and necessary skills and reducing challenging behaviors that interfere with learning.

Recently, ABA has increasingly become the target of much controversy as self-advocates are speaking up about their personal experiences with ABA and the rejection of the notion that teaching autistic individuals the skills we deem necessary without their input and self-determination is erroneous. Some advocates for this community argue that independence without happiness is a hollow goal, and that autistic individuals should decide what outcome they want to achieve. Becoming as much like everyone else as possible may not be it.

ABA, which is essentially the science of good teaching, has a long history and was originally developed in the 1960s by a group of researchers at the University of Washington. ABA was used to treat individuals with developmental disabilities and initially was a rigid, highly-structured and teacher-directed program which led to some of the negative experiences and associations with ABA. Historically, for example, ABA was used to reduce or eliminate “stimming” – repetitive physical movements and sounds that may soothe and reduce anxiety. We now better understand that stimming helps autistic individuals manage their sensory processing and their environments.

 Just like in other areas of medicine and science, the field of ABA has advanced in a significant and meaningful way to become a play-based, naturalistic, family-focused and individualized, contemporary treatment that is tailored to the unique needs and goals of each individual. Another hallmark of a good ABA program is the collection and reporting of data to demonstrate efficacy. Most payors today require providers to demonstrate success, validated by parents, of the participant measured by obtaining and maintaining goals that are developed by the provider and family together. If your service provider is not providing a program that fits this description, you are likely not in the hands of a provider who is adhering to best and current practices.

As the ABA provider community has the opportunity to learn from more adults, something that was not available when this science was first being applied to autism, there are more and more opportunities to adjust and modify services to meet the needs to each individual. The idea that we discard a technology that has successfully treated thousands of individuals because of negative experiences is akin to suggesting that we eliminate an entire specialty of medicine because of some failures of treatment.  Having said that, service should always be informed by the individual receiving them, and their advocates who have their best interests at heart.

Every negative experience is unacceptable and should be heard so that changes can be made to ensure an optimal experience for future clients. Good ABA programs are client-centered and solicit the consent and input of all involved. As you consider treatment for your family member or yourself, do your research and ask your provider the important questions:

o   Will I participate in determining the goals of treatment for myself/ my child?

o   How are your staff trained?

o   How is my child’s program developed? Do all clients receive the same program or are they individualized?

o   Will there be parent goals as part of my child’s program?

o   How often is my child’s program modified or revised?

o   How is data collected and reported? How often will I see data on my child’s progress?

 Your child’s program should be client-centered and future looking which means that your family and relevant caregivers are providing input into your child’s strengths and challenges, and that you and your child are helping to guide the goals of his/her program based on your preferences and needs.

 The science of ABA has a long history with decades of research to support its development and evolution. While ABA is most widely known in its application to autism, ABA was developed, and has been applied, to address many circumstances regarding behavior that matter to society. ABA is applied in many different areas including mental health, animal training, organizational behavior management, marketing, forensics, sports, and physical health, to name a few. Just as other areas of science and medicine advance and application of treatments change, so has the field of ABA. Many lives have been impacted by ABA for the better. It is incumbent upon the professional community to listen, learn, and evolve its practice so that their services are as relevant and effective as possible. After all, the purpose of ABA is to help consumers of these services achieve goals they define as meaningful and helpful.

Managing Your Child’s Screen Time During COVID-19 with Katherine Johnson, BCBA

The sudden disruption in routine due to COVID-19 is challenging for all individuals to manage as we adjust to a new, and hopefully short-lived, normal of staying at home and ceasing most of our regular activities. For families of individuals with autism and other disabilities, the disruption can be especially challenging.

Resources Discussed:

Cosmic Kids Yoga: https://www.youtube.com/CosmicKidsYoga

Raz Kids: https://www.raz-kids.com/

Epic: https://www.getepic.com/

Prodigy: https://www.prodigygame.com/

DreamBox: https://www.dreambox.com/

Out School: https://outschool.com/

Story Time from Space: https://storytimefromspace.com/library/

Bark: https://www.bark.us/

For more helpful tips and resources, sign up for our Parent Newsletter at learnbehavioral.com/learnacademy/parentresources.

All Autism Talk (allautismtalk.com) is sponsored by LEARN Behavioral (learnbehavioral.com/learnacademy).

Tips and Resources for Families during COVID-19 with Katherine Johnson, BCBA

The sudden disruption in routine due to COVID-19 is challenging for all individuals to manage as we adjust to a new, and hopefully short-lived, normal of staying at home and ceasing most of our regular activities. For families of individuals with autism and other disabilities, the disruption can be especially challenging.

Richie has a conversation with Katherine Johnson, BCBA and founder of Advances Learning Center to share helpful tips and resources for you and family during this time.

Katherine has a Master of Arts degree in Behavior Disorders and Applied Behavior Analysis from Columbia University Teachers College and is a Board Certified Behavior Analyst (Charter Certificant). Katherine has taught in both private and public schools at pre-school and elementary levels and has provided educational consultation services to public schools and home programs. She has taught undergraduate behavior analysis courses at Northeastern University and graduate level courses at Simmons College, has provided parent training through the May Institute, and is on the Advisory Board for the undergraduate psychology program in Applied Behavior Analysis at Regis College. Katherine also currently serves as Vice President of MassCAP.

Resources Discussed:

Go Noodle: https://www.gonoodle.com/ 

Privilege Points: http://www.privilegepoints.com/

For more helpful tips and resources, sign up for our Parent Newsletter at learnbehavioral.com/learnacademy/parentresources.

All Autism Talk (allautismtalk.com) is sponsored by LEARN Behavioral (learnbehavioral.com/learnacademy).

Autism and Co-occurring Disorders with Susan W. White & Carla Mazefsky

Dr. Carla Mazefsky is an Associate Professor of Psychiatry at the University of Pittsburgh School of Medicine, where she is Co-Director of the Center for Autism Research (CeFAR) and the Director of the Regulation of Emotion in ASD Adults, Children, & Teens (REAACT) Research Program. She is a past recipient of the INSAR Ritvo-Slifka Award for Innovation in Autism Research. Her current studies take a lifespan approach, with an emphasis on adolescence and the transition to adulthood.  Her research focuses primarily on emotion regulation and associated mental health and behavioral concerns in autism spectrum disorder (ASD), including the mechanisms underlying emotion dysregulation in ASD and the development of new assessment and treatment approaches. She is co-editor of the Oxford Handbook of Autism and Co-Occurring Psychiatric Conditions, author of the Emotion Dysregulation Inventory, and co-author of the Emotion Awareness and Skills Enhancement (EASE) Program.   

Susan W. White is Professor and Doddridge Saxon Chair in Clinical Psychology at the University of Alabama. Her clinical and research interests include development and evaluation of psychosocial treatments that target transdiagnostic processes underlying psychopathology. She is associate editor for the Journal of Clinical Child and Adolescent Psychology and the Journal of Autism and Developmental Disorders, and she the Editor in Chief of the ABCT Series on Implementation of Clinical Approaches. Her research has been funded by the National Institutes of Health and the Department of Defense. She received her PhD from Florida State University.

All Autism Talk (allautismtalk.com) is sponsored by LEARN Behavioral (learnbehavioral.com/learnacademy).

Early Detection and Treatment for Autism with Dr. Geraldine Dawson

Geraldine Dawson is the William Cleland Distinguished Professor of Psychiatry and Behavioral Sciences at Duke University, where she also is Professor of Pediatrics and Psychology & Neuroscience. Dawson is the Director of the Duke Institute for Brain Sciences whose mission is to promote interdisciplinary brain science and translate discoveries into solutions for health and society.  Dawson also is Director of the Duke Center for Autism and Brain Development, an NIH Autism Center of Excellence, which is an interdisciplinary research program and clinic, aimed to improve the lives of those with autism through research, education, clinical services, and policy. She has published several books on autism, including An Early Start for Your Child with Autism, A Parent’s Guide to High-Functioning Autism, and  What Science Tells Us about Autism Spectrum Disorder.  Dawson’s pioneering studies were among the first to describe the emergence of autism symptoms during infancy, leading to new screening tools. Dawson co-created the Early Start Denver Model, an early autism intervention shown to improve behavioral outcomes, which has been translated into 17 languages and is used worldwide. Her work showed for the first time that early intervention can normalize aspects of brain activity in children with autism, changing the field’s view of brain plasticity in autism, a finding recognized by TIME Magazine as one of the top 10 medical breakthroughs of 2012. A strong advocate for persons with autism, Dawson has testified a number of times before the US Congress in support of major autism legislation and was appointed by the U.S. Secretary for Health and Human Services for two terms to the DHHS IACC.

All Autism Talk (allautismtalk.com) is sponsored by LEARN Behavioral (learnbehavioral.com).

Our amazing daughter

Autism is a diagnosis that can be emotional for parents and families to accept. In our case, the diagnosis needed to be accepted by our family. Our daughter is amazing. She is incredibly bright, sweet, and an absolute joy to be around. As a parent, one of the most gut-wrenching things we experienced was being told time after time, “Your child has challenges, but no one knows why.” In May of 2013, we finally got our answer. Our beautiful girl has a rare genetic condition called Cohen Syndrome that causes intellectual, medical, and physical disabilities. Receiving this diagnosis was bittersweet because we finally got an answer, but we still didn’t know how to help our daughter. With a rare genetic condition like this, there are several programs, specialists, and therapies available that we didn’t even know existed. There are people with resources who wanted to help but had never heard of our child’s condition. It was very alarming for us because even though we were thankful for their help, the process can be anxiety-inducing.

When our daughter was diagnosed with Autism a year ago, it wasn’t a bittersweet moment like when we received her original diagnosis of Cohen Syndrome. It was just sweet! Autism Awareness has been raised, and there are people in the education and medical field who have experience with Autism. I fully accept that our daughter has Autism, but the fact is that a lot of her challenges stem from her primary diagnosis that is rare. I asked myself how this “known” diagnosis could help when you have to take her “unknown” diagnosis into account? The answer was ABA therapy.

Although we have seen AMAZING progress through ABA therapy in our daughter over the last year, the truth is that it cannot be contributed fully to “just” ABA therapy. ABA therapy with the right team is the answer. What makes the right team? Compassion, humility, resource-connected, knowledgeable, and experienced team members. ABA is an evidence-based practice.

We know firsthand that having a team that is compassionate and humble will allow for success. Having a child with complex healthcare needs is overwhelming. We almost always feel like we aren’t doing enough (are we acting more like advocates instead of just being mom and dad? Is our child receiving the right therapies, too many or not enough? How can we balance comfortability for a child whose world is almost always uncomfortable, but also push her to reach her full potential?). Adding ABA therapy to our already crammed schedule brought apprehension. But having the right team, takes the stress out of the equation. We (parents, child and staff) work together on proper goals and time management.

ABA is an excellent tool that I highly recommend families consider, but it’s not the only tool. Especially when working with a child who has a rare genetic condition plus an Autism diagnosis. Other resources and tools may assist families in achieving their goals. For us this meant learning about the objectives as a family together while our daughter was mastering goals. ABA works best when it’s combined with your other resources; (i.e., current therapies in place, IEP teams, community support, etc.) as this helps generalize what is learned. We have seen our daughter transfer the skills she’s learned in her sessions into her everyday life. Our daughter, recently turned eight years old, received a skilled companion dog, and is transitioning to a general education classroom. This transition and the skills that her amazing ABA team teach her have been a blessing to her, and our family. Our daughter has been showing more affection to those she cares about. She’s able to master her goals outside of her sessions and into the community (which I am unable to express how HUGE this is). She is also able to complete her homework with modifications; additionally, she can share who she is with others instead of allowing her diagnoses to define her as others think it does.

From a logical perspective, ABA therapy is remarkable in how it allows children (no matter what the diagnosis is) to learn things that other children may more readily know. From a mom’s perspective, it’s beyond amazing. This process has provided my husband and me with the support needed so we can be her parents, instead of her providers. Partnering in this way gives us opportunities we wouldn’t be able to have without this kind of assistance. There’s a saying that it takes a village to raise a child. In the early days of our daughter’s life, my husband and I would jokingly say it takes a hospital to raise our child. As her health has become more stable, and we’ve been able to focus more on her education and life skills, we agree that in fact, it takes a village to raise a child — a properly equipped village. And we are so grateful that God blessed us with her ABA team as an addition to our village.

– by Nicole